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Month: September 2017

Susie Notes: Our 44 year old son has been diagnosed with Leukodystrophy, and is in ‘an altered mind state”. Read: dementia

Since all this has happened we’ve tried to find little ways to make us happy.

We’ve been married over 46 years and have enjoyed music that has eventually played out the story of our life together.

Our Bose stereo system was over 20 years old. After being ‘fixed’ ten years ago, it’s been disabled for a long time, holding cd’s hostage for too many years. Bossman hooked it up to another CD player for a while but I had to use three remotes to run the working CD player that was on the bottom shelf, a quarter of an inch from the floor. I wear progressive bifocals. Fagedaboudit. I strained my neck trying to figure out what stupid button did what.

A few days ago, I wandered into the living room, stood in front of the cd player with all my music in it and started to cry.

Bossman said, “What’s the matter?”

I sat on the edge of the coffee table, looking at that blurry old cd player and said, “All I want is my music.” I sobbed and he held me.

Monday he went to one of the Big Box stores, Sam’s or Costco, priced out equipment and came home to share what was on sale.

“Go get it. We need it.”

He went to the bank with his safe deposit key, and took out money from his dad’s estate sale that he’d been saving for the last eight years. (this is very odd, since Bossman will research something until it’s out-of-date) He brought home a new speaker bar and had it set up before dinner was ready.

For the first time, in a long time, we danced with tears in the living room to our music.

I browsed through my drafts before writing this blog and discovered 13 drafts of posts I never finished. It was like reading an unfinished journal that contained entries about Red Cross, metabolism tests, and a rant on left-turn green lights. Life was so much easier then. Although, I think I’ll revisit that left-turn green light idea someday soon.

Part Two

Learning to live a life you never planned.

I believe this is where we sit most days. Learning to accept and devote life to not only God but to our medically disabled adult children. Yes, children. Our daughter’s been ill since 2008 but only officially disabled since 2016. Our son had to ‘one-up’ her (her words) on July 10th when he had a horrible seizure. (No details will follow as it makes me ill) He’s been diagnosed with Leukodystrophy and is in an “fatal altered mind state” – aka dementia. She’s 41 and he just turned 44. They both live with us, thank God. We don’t have to worry from afar, we can worry up-close-and-personal.

There have been days where we’ll watch our son wrestle with getting a shirt on, walking through the house in his BVD’s pacing from front to back, back to front. I let him try to figure it out and when the time is right I’ll offer help. He always says “Thanks, Mom.” I have learned to let him struggle for a little bit, then offer assistance. It’s better that way. It’s interesting as I watch him being attacked by a tee shirt, an arm in a sleeve working like a noose or the roaster chicken getting tied up for the oven – the wing all wack-a-doo. His pacing will end about six feet from me, his war with the tee-shirt over. He gave it his best shot. Pride bruised but still intact.

Finding humor in the everyday is a diffuser for me. I’ve accepted the life of not knowing what comes next. I don’t always like it, but I’ve accepted it and make the best of it. It is so out of my hands.

Part Three

I also have a love/hate relationship with FB at this time. I’m happy so many people have had great family vacations, but a tiny part of me – okay, maybe a not-so-tiny part of me, is a bit envious and sad. I had hoped my kids would be joining us on vacations with their families during this time of retirement. We all got socked on that one.

Part Four

This blog has not been written to gain any type of sympathy. nah-uh. I just wanted to share what some people around you might be experiencing without you even knowing it. We’re blessed with wonderful family, friends and neighbors that know our story. Look around you and learn other people’s stories. You might be the blessing they’ve been waiting for.